There was a one-day pre-AACFS conference meeting organized by Pat Fero (who did a tremendous job, by the way) and the Wisconsin support group organization. They invited Ritchie Shoemaker, Jacob Teitelbaum, Karen Vrchota and Byron Hyde to speak. It was held in Luther’s Blues, a restaurant-bar on University Avenue in downtown Madison, WI. Most of the crowd of about 100 there were female PWCs from Wisconsin and the surrounding areas. This meeting was billed as being concerned with “effective treatment” of CFS and FM. (I might mention that it appears to me that the AACFS organization tends to focus on more conventional medical treatments using drugs, and less on alternative treatments, while this separate meeting was more nonconventional or alternative in nature.)

Ritchie Shoemaker, in my opinion, is in a class by himself, doing some very innovative work. He talked about the history of his involvement with a range of multiple-symptom conditions that turned out to involve neurotoxins. It started with an outbreak of pfiesteria near Pocomoke, Maryland, where he practices. A woman came in with a serious case of secretory diarrhea. He have her cholestyramine, because it was the most constipating drug he knew of. It not only stopped the diarrhea, but took away her headache, cough, and loss of memory. This caused Shoemaker to suspect that a toxin was involved, that cholestyramine was able to bind. He tried cholestyramine on some other patients, and it worked on them, too. He also tried it on people in Florida who lived near nurseries that used a lot of fungicides. It also worked on people living near some polluted lakes close-by, who were sick.

He didn’t have a lab test that would show whether people had neurotoxins. Then he met Ken Hudnell from the EPA, who had been using a visual contrast sensitivity test, and he found that people with pfiesteria had a positive result on this test. It also worked on people who had mold sensitivities from buildings. Shoemaker mentioned that he himself is sensitive to molds, and he can tell within 5 minutes whether they are present in a building. In fact, he said there were molds in the building in which we were meeting! He recommended that if there were others like him present, they should get some cholestyramine.

Next, he talked about Lyme patients. He said that they had had antibiotics, but they were still sick. He gave them the visual contrast sensitivity test, and they came up positive, indicating that they had neurotoxins. When he gave cholestyramine to people who had Lyme disease, he found that 53% of them became much sicker. He hypothesized that this must have resulted from a mobilization of toxins that caused cytokine production by fat cells, activated by toxins. The toxins have an ionophore structure, which enables them to bind to fat cells. So he started measuring cytokines, and found that some were elevated. He then started giving them the diabetes drugs Actos or Avandia first, which block cytokine production, and then they didn’t have the bad response to cholestyramine.

He found that using this same treatment topically works with brown recluse spider bites, which then heal in 10 to 21 days.

The next thing he talked about was vascular endothelial growth factor (VEGF). He found that people with chronic fatigue who did not get better from these earlier mentioned treatments were low in VEGF. He found that a big fraction of these people had Ehlers-Danlos type 3 syndrome, with a wingspan greater than their height. He found that quite a few had genetic characteristics similar to people with celiac disease. He found that many had antibodies to cardiolipin, gliadin and endomysial protein. He found that these genetic differences explained why some people got sick and some didn’t, in the same environment. He began characterizing the HLA (I thought this stood for human leukocyte antigen, but he said it stands for histocompatibility locus A) genetics of the patients, because this controls immune response. He found different HLA types for the Pfiesteria patients, the mold patients and the post-Lyme patients.

After following patients for 5 years, he found that there were still some who were not well, after fixing all the above problems. Something was missing, and he found that there was a problem with complement, which is part of the innate immune response. He said he has a model of chronic fatigue in which the acquired immune response goes to zero, and the more primordial innate immune response is compromised. He noted that the oldest organisms, such as the blue- green algae, the fungi and the spirochetes, all make toxins.

He passed out a handout called “The Biotoxin Pathway.” The handout showed biological toxins producing a cytokine response from fat cells by means of an activation of toll receptors. The biotoxins also have direct effects on nerve cells, which give the poor performance on contrast sensitivity tests. The cytokines also have effects on capillaries, leading to restricted blood flow and lower oxygen levels.

Reduced VEGF leads to fatigue, muscle cramps and shortness of breath, but can be overridden by replacement with erythropoeitin. People with certain HLA genotypes may develop inappropriate immune response, including autoimmune response to myelin basic protein, or to gliadin, or to cardiolipin.

The cytokines from the fat cells can damage leptin receptors in the hypothalamus. Fat cells then produce more leptin, leading to obesity (which doesn’t respond to exercise and diet).

Damaged leptin receptors in the hypothalamus lead to reduced MSH leads to sleep disturbance via reduction of melatonin production, to chronic pain via suppression of endorphins, to gastrointestinal problems, to prolonged illness, to resistant staph bacteria, to changes in ACTH and cortisol levels, to reduced sex hormones, and to reduced antidiuretic hormone.

He said that some PWCs are very dehydrated because they urinate water out so rapidly. The osmolality of their blood thus runs very high, and their sweat is more concentrated in salts than that of cystic fibrosis patients, which were thought to be the highest of all. He said this causes them to conduct electricity very well, and accounts for why they experience static electricity shocks from light switches. He said they use their elbows to turn on light switches to avoid these shocks. They are able to stop Palm Pilots and watches by touching them.

He said that multiple antibiotic resistant staph organisms develop biofilms in the nasal passages, but don’t usually invade. But in MSH-deficient patients only, these bacteria release hemolysins to help harvest iron they need from blood cells, and these hemolysins turn on a cytokine response. Therefore, the MSH will never rise if these bacteria are present. It takes a special test to find these bacteria, called an API-staph culture. They also make exotoxins, which destroy MSH.

He said that he recommends that people get some additional tests run to see if they have a biotoxin illness. He also recommends that people look at the history of their onset and consider whether it might be a biotoxin illness. Not all chronic fatigue is produced by biotoxins, but some is. Not all biotoxin illnesses produce chronic fatigue.

He talked about his “HLA Rosetta Stone.” This involves measuring the genotypes of HLA, using a PCR test, rather than a serology test. He can tell from these LabCorp tests what illnesses people will be vulnerable to. Those who are homozygous for certain genotypes are particularly vulnerable. He is doing detailed studies of these people.

He recommends testing for MSH, biofilm-forming multiple antibiotic resistant staph, VEGF, C3a (Quest will do it, but you have to use the right code), and MMP-9. Since there are some details involved in taking proper samples and specifying the tests, I think it would be best if people check with Dr. Shoemaker before ordering them.

He talked about the problem of construction of concrete buildings in which the interior walls are built too soon, sealing water in the concrete that doesn’t get a chance to evaporate. This produces conditions ripe for growing mold in the building.

He said that chronic fatigue is the end result of multiple different processes. There is no one single weapon against it. We need to tease out subsets.

He said that C3a is a good marker for Lyme disease. Lyme disease causes C3a to go way up. If a person gets “sick as hell” from cholestyramine, they might have Lyme disease. If they have a history that suggests tick exposure, then even if the Lyme tests are negative, he will give 3 weeks of doxycycline and see what the response is.

He talked about the satisfaction he gets from treating patients with neurotoxin illnesses. He charges everyone who can pay an extra $50 which goes to his foundation. Among other things, this covers treatment of people who cannot pay. He emphasized the value of the visual contrast sensitivity test. He has results from 3,000 patients now. This test shows whether treatment is helping, as well as diagnosing the neurotoxin illnesses initially. Rows C and D in the test are the most sensitive for detecting neurotoxins.

Dr. Shoemaker has a new book coming out in about six weeks, called Mold Warriors. For those who want to know more about his ideas and treatments, I suggest that you consider getting a copy when it comes out. His website is www.chronicneurotoxins.com.

All sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.